He was 91. The age when everyone around believed he had reached a very important milestone. He couldn't agree more - he himself felt he had lived his life. Having recovered from a stroke recently, he was battling a sodium imbalance in his cardiovascular system. It had necessitated another visit to the hospital; he had travelled in an ambulance, conscious enough to ask the driver not to put on the siren and create a ruckus. He disliked the full-body scanner diagnosis, the doctor had insisted he go through; "it makes everything in my head rattle, especially my teeth. It's hateful, take me home," he had said. He could not stand the nurses at the hospital either. "The head-nurse wakes me up, even beats me". Another helpless senior citizen being tortured? Maybe he had made it up, just to get home quicker? After he got home, whenever he spoke about his health condition, he was quite firm - no more hospitals, no invasive painful treatment, he wanted to be at home, in familiar surroundings.
Two years went by quickly, with a regular monthly blood test, where a paramedic would visit home to collect the blood sample, based on which the doctor would analyse and vary his dosage if required and recommend tablets that he was happy to ingest orally. This went on till he reached a point when he became very weak, stopped eating, needed a wheel chair, even needed help to move, eventually reaching a stage when he had to be taken to a hospital again, this time totally unaware of his surroundings and unable to even comment on the ambulance siren. The duty doctor was very clear and fully understood - only palliative treatment, no ventilator, no dialysis, and no invasive treatment that would cause further trauma. His eyes were glazed; he was not registering his surroundings. Overnight, at the hospital, his heart became weaker and weaker and finally stalled.
He left behind no 'living will', no directive to his physicians written in advance, no document stating his wishes for end-of-life medical care! But he had had discussions at various times leaving family members and doctors with very little to guess about what he preferred in terms of treatment. Just like in most Indian families, who consider addressing the matter of death a taboo, decisions about medical care remained the responsibility of the spouse and family members. They were always sufficiently aware of the patient's desires and fully capable of following the patient's unwritten, verbal directives. There was no question about any painful disputes, even less the need to visit a courtroom. The concerned doctors, too, relied on personal communication, not on documents and invariably decided on a line of treatment after due discussion with the family members.
This form of communication has existed within families in India all this while, but a legally binding instrument to control and influence healthcare, after an individual becomes incapacitated, has got a fillip after the Supreme Court's landmark judgement in March, legalising passive euthanasia, permitting individuals to decide against artificial life support by creating a 'living will'.
Doctors and medical experts can let a terminally-ill patient die by adhering to this 'living will' made by the terminally-ill patient himself, specifying guidelines and procedures to be adopted, not being put on life-support if he slips into a coma, not prolonging his life by putting him on a ventilator or an artificial support
system.
While most of us can create a 'living will' ourselves using a software application, without having to pay legal fee, a lawyer to prepare it would make sure validity is ensured and other requirements regarding notarisation and witnesses are met. Another document appointing a power of attorney (PoA) to carry out the end-of-life treatment wishes that are written down in the 'living will' or medical directive becomes necessary. This is even more relevant where dialogues about death in families are unnatural and forced. Recourse to a legally binding instrument to control and influence an individual's healthcare decision when he is unable to make them becomes somewhat obligatory.
If no such document exists, a default option is inevitably adopted, where everything is done for the patient, causing senior citizens to die lonely, tortured painful deaths on ventilators, and life support systems, connected to feeding tubes, in hospital ICUs. Because of the emotional perspective dictated by our cultural and religious realities, families end up bearing huge medical costs, and often significant legal costs are required to get approvals, after making frequent visits to our already overburdened courts.
Our 93-year-old did not need a 'living will', yet he escaped that fate because the family members and doctors were acquainted with, understood and respected his wishes throughout.
Now that we have the Supreme Court's landmark judgement, supported with an increased awareness of the 'living will', hopefully, most of us will enjoy similar good fortune.
(The writer is Associate Professor, Sai Vidya Institute of Technology, Rajanukunte, Bengaluru)
